This Really Clear Guide to MS is all about sharing useful information that you can easily understand with No Big Words or Medical Jargon. The topics included, I hope, will help you get your head around Multiple Sclerosis (MS) a little more.

I have lived with MS for over 18 years, learnt loads over the last 20 years and am still learning. Yes being a Registered Nurse helped but when dealing with everyday life challenges we can all face then dealing with MS it can be tough sometimes.

As I often say, less can be more, so this is not a big read but a starting point with further UK information links included. I hope you will find it helpful and a quick read! First Published in UK 2012 by Karen Aston via electronic websites www.kazaston.com

Copyright Karen Aston 2012

Acknowledgements

My special thanks to everyone that has supported me to learn about MS since my diagnosis. In particular the MS teams that have not only provided first class care in the National Health Service (NHS) but always listened to my questions about MS.

I would also like to acknowledge the following people for their expert medical help and support over recent years : Dr Richard Nicholas my fantastic neurologist, Dr Omar Malik and Dr Victor Chamoun also amazing neurologists. My GP Dr Leech, wonderful MS Nurses at Charing Cross Hospital in London. Fiona Goodhand my supportive and patient Occupational Therapist. The MS Trust & MS Society for always providing up to date research and information about MS. Oyster Healthcare that produces MS patient magazines and for whom I am a patient editor. My fellow Rotarians from the Rotary Club of London.

Finally, my family and amazing friends for all of their support & encouragement for the Really Clear Guide, through both exciting and tough times in my life.

For anyone affected by MS

There’s a lot of information out there about MS, but it’s not always easy to find a guide to the basics. I know how confusing it can be to get to grips with what Multiple Sclerosis is, and how it can affect you - especially if you’re newly diagnosed. So I’ve put together this ’really clear guide’. If you want to understand the topic quickly, and find contacts to provide more detailed material, then this is the guide you’ve been looking for

Multiple sclerosis (MS) is a disease affecting three areas of the body: The brain, the spinal cord and the nerve connecting the eye and brain, the optic nerve.

MS is classed as a neurological condition and an autoimmune disease. This means the body’s immune system, that should normally target invading germs, attacks itself and the myelin insulation around nerves that can get damaged when trying to fight things like infections. Everyone’s nerve cells have a covering called myelin. MS causes scars to this covering, which can damage the way the nerves and brain talk to each other – and it’s this that can cause problems with the way your body functions.

To better understand this condition, you can think about nerves as household electrical wiring which is made up of a copper core that conducts the electricity with a plastic surround that acts as insulation. Damage to this myelin that may be patchy or recurrent is the hallmark of MS and can affect the ability of nerves to conduct electricity. All our movements depend upon electric signals from the brain to reach our muscles, which is why movement problems can occur in MS. All that we see, hear and feel (our senses), depend upon electric signals running in the opposite direction from our eyes, ears and skin back to the brain. Bladder, bowels and genital functions also depend upon electrical connections to the brain and spinal cord, which is why these areas can sometimes misbehave.

An attack of demyelination is very occasionally a one-off event in a person’s life, without any further reminders. This is not MS. To be MS, your neurologists have to establish that you are at significant risk of further demyelination in the future. The most reliable indicator is when there have been several attacks over time, at the very least two attacks. The phrase “dissemination in time” is used. Doctor’s also have to be sure that the demyelination is not limited to the same spot each time, which is again not MS. The phrase ”dissemination in space“ is used. Hence, the “multiple” of MS refers to multiple episodes as well as multiple affected areas.

We simply don’t know even after over 150 years of research. Some theories talk about acute fevers, lack of sunlight or diet, but these need to be proven. The prime suspects are however, the white blood cells whose normal job is to fight germs. A small group of them appear to target the insulating myelin instead of getting on with their job of fighting invading viruses and bacteria. This misbehaviour might have been started after they tackled a virus that closely resembled myelin, and they thereafter continued to confuse friend and foe. Most recently, a lack of vitamin D early in life is thought also to play a role in corrupting white cell behaviour.

MS can be tough to diagnose and it takes time. A neurologist will need clinical evidence from symptoms & medical test results. They need to see at least two or more areas of scarring in different parts of the central nervous system. This can often be found by undertaking the following:

The main source of information is the story you give the doctor (“the history”). The timing of symptoms is important: How quickly did the symptom develop? Was it intermittent or continuous? How long did it persist? Also you will need to think back to previous symptoms in your life, particularly symptoms that lasted more than a day.

Past irritation to your brain, spinal cord or optic nerve can also be detected through a physical examination. This can involve being asked to perform certain movements such as looking one way then the other, checking the back of the eyes or moving your arms and legs in particular ways. Your reflexes are assessed with a tendon hammer and by mildly scratching the soles of the feet. You may be asked to report how vibration of a tuning fork or sharp pin feels on your skin. More intimate examination is normally not required.

MRI (Magnetic Resonance Imaging) of the brain and spinal cord can look to see if there are any visible scars from demyelination. Sometimes a dye is injected to show up recent attack.

Lumbar puncture to sample the fluid that surrounds the brain and spinal cord (cerebrospinal fluid, more commonly called CSF). To do this the back is numbed and a fine needle is inserted in the lower back. CSF is produced in the brain, so that if white blood cells are attacking the brain, they can appear in this fluid. An even more powerful indicator of MS is detecting proteins (oligoclonal bands) that are produced by the white cells and leak into the CSF.

Evoked Potentials to measure the how well electrical signals are conducted along nerve pathways to the brain. If there has been any demyelination, then the speed of conduction can be slower.

MS symptoms can be variable and unpredictable. You might experience only a few, several or even none at all some days. People may need some treatment but not always. Most commonly people first notice a single nerve dysfunction, such as an inflamed nerve in one eye (optic neuritis). However, there are two ways in which MS symptoms can manifest themselves and both ways can happen at the same time.

Firstly there can be short attacks lasting days or weeks called relapses, from which there is a complete, or almost complete, recovery. In between are periods during which nothing much appears to happen, a period called remission. These attacks reflect sudden aggressive behaviour of white blood cells towards a small area of brain, cord or optic nerve.

Secondly there can be very gradual changes over many years, called progression, which is normally only apparent over time. This does not occur in everyone and can take many years to appear. For instance someone may have been able to walk two miles five years ago but now can now manage only one mile. This reflects a decline in the performance of nerves that have been previously affected by demyelination. Demyelination is the most striking finding of MS, but it is not necessarily the most important. The ability of the brain tissue to maintain and regenerate itself can be compromised as a result of the demyelination. This can cause nerve cell loss and this is thought to be responsible for persisting symptoms and any more gradual changes sometimes seen in later years.

Other symptoms might include:

Tiredness- known as Fatigue that may not go away even after loads of rest or sleep

Blurred or double vision that may just arise at end of the day or if tired

Shaky hands - known as a tremor - when trying pick a cup up for example

Problems concentrating or being a little more forgetful with names

Feeling really upbeat then not so happy, or sad, in mood, depressed or not sleeping well. This may change quickly and may involve wanting to laugh or cry when you wouldn’t normally

Weak arms or legs that affect strength or the ability to move around

Numbness or tingling that may come and then disappear again just as quickly

Wanting to go to the toilet to pass urine (have a pee) more or less often than 4 to 6 times a day. Also, constipation or going more often than normal for a pooh/ number two.

Dizziness and vertigo that affects your balance

Jerking or stiffness in the muscles of arms, legs or back when moved. Also known as spasms, they can really hurt like bad cramp or shooting pains where limbs will need to be stretched to keep flexible.

Changes to your voice/speech or swallowing

Feeling a bit sick or more nauseous than normal

Pain giving different sensations like burning , tightness or numbness

Remember many people that don’t have MS can experience these symptoms too. This may be because their diet has changed, they are not drinking enough water, or they have extra stress and pressures.

So if you are experiencing any unusual symptoms and are not happy after thinking about the problem, always get them checked out by a doctor, please.

I find the traditional classification of MS can be confusing. It may be helpful to present MS as a condition that is either active or not active. However, here is a brief summary of the traditional classifications. MS attacks the myelin that covers your nerve cells, but the disease can progress in four main ways.

Relapsing-remitting: 85% of people have relapsing-remitting MS. They have attacks of worsening nervous function, followed by full or partial recovery periods.Primary-progressive: their MS gets slowly worse, with no clear periods of remission.Secondary-progressive: after a period of relapsing-remitting MS, the disease then gets slowly worse with no clear periods of remission. Thanks to modern medications, far fewer people suffer in this particular way than has been the case in the past.Progressive-relapsing: Only rarely, sufferers find the disease steadily worsens with clear attacks of deteriorating nervous function as well.
People also talk about Benign MS. This is where people have no further symptoms for 15-30 years after 1 or 2 relapses. However, it can not be truly diagnosed until after death, so talk to your specialist about this one as the MS may be inactive as it's under control or it's a slower version of relapsing/remitting MS and it is always good to be realistic.

There are various treatments for MS. These are focused on the following:

Getting the right information about MS to help make the best decisions. It often helps if you can talk about MS and understand more, as people often cope better if they do this. Also answer questions you may have that are worrying or concern you and people that care about you.

Taking care of yourself with areas like a good diet, enough sleep, regular exercise and thinking about what you can do with your lifestyle to get the balance right.

Treating Symptoms not always with tablets or medications. For example balance may be improved with exercise, drinking enough water may help your bladder (1.5 litres needed normally per day) to function properly. There are however, a variety of medications that your MS team or GP can look to prescribe that may help too.

Managing Relapses If it's a severe relapse your MS Doctor may suggest steroids that can be taken orally or into a vein in hospital, often as a day patient for a few days to try and speed up recovery. These corticosteroids are not to build muscles.

MS Disease Modifying Drugs are used to reduce the number of relapses, their severity and possible damage. Also to try to delay the longer term progression of MS. These drugs are used when relapses are still occurring in relapsing-remitting MS or secondary progressive MS, if relapses still happen. For Primary Progressive MS and secondary progressive MS when relapses no longer happen these drugs have not beenshown to be helpful.

How are these MS Drugs taken? Treatments are either: Self Administered by injections into fat (like a diabetic takes insulin) 3 times a week, every other day or every day 7 times a week. Also, as a once a week treatment injected into the muscle. There are different types of self administered drugs available that aim to reduce the autoimmune reaction that causes inflammation and destruction of myelin, which an MS Doctor can prescribe. A once a day tablet has also recently been approved. It is stronger than the injections but it has some side effects and can only be given at the moment after other injection treatments have been tried.

Hospital Administered drugs that have been developed more recently are administered straight into your blood via a vein (intravenous), often once every 4 weeks. These drugs are designed to prevent white blood cells crossing the blood-brain barrier and causing nerve damage and destruction. Close monitoring while having these medications is essential. This follows a full assessment by an MS Doctor to check suitability for treatment, to make sure it is safe to start and continue the medications. Regular blood tests are carried out, along with blood pressure, pulse and temperature readings and full MS nurse assessments to check for any signs of allergic reactions. As the hospital administered drugs can be stronger and have toxic effects on the body, any side effects need to be reported ASAP to your MS Team.

There are also around ten new MS drugs currently being tested within clinical trials and awaiting possible thumbs up, for prescription to MS patients. At least 4 of these can be taken Orally like a Tablet. Others via Injection into skin or straight into blood intravenously. Even more new treatment options include Stem Cell Therapy and Off- Label prescription of Drugs that are licensed and prescribed for other conditions but not yet for MS Treatment or which are still being tested in Clinical Trials. Therefore, it is vital to consider any risks with your MS Doctor prior to taking a drug. There is a lot of fantastic information available from MS Charities to give you independent and unbiased advice on MS Treatment Decision Making. So do check this out so you can make the best choice and remember you can discuss it all first with your MS Team. Alternative Therapies, Counselling, Cannabis spray, Hyper-baric Oxygen Therapy, Meditation, CCSVI are also available.

Can MS be cured? Not yet. But it is possible to manage symptoms with drugs and therapies. Ongoing research gives us hope that MS may be cured at some point in the future.

Is it contagious? No. So you haven’t caught it.

Can I have children if I have MS? Yes having MS need not stop you. During Pregnancy women often feel great and may suffer fewer problems. The tough time can be in the first 3 months after giving birth. Talk this through with your MS Doctor and team, as looking after a baby can be very tiring and totally exhausting if fatigue is a problem. Also, various medications or treatments may need to be reviewed first.

Will I pass MS on to my children? It is highly unlikely your children will develop MS. Talk to a health professional and, above all, don’t let it put you off.

Should I tell my children and talk about MS to them? Yes. A lot of great research has shown kids want to know about what is happening. Keep it simple and look at some of the fantastic publications that offer detailed advice on how you may talk it through with them.

I’ve been told I’ve got MS. Will I end up in a wheelchair? Most people with MS do not become severely disabled. Two-thirds of people can walk 20 years after developing the disease, but some do need walking aids to help with tiredness, balance or weakness.

Where can I get help for Multiple Sclerosis? Your first port of call will probably be your GP, but there are other health or social care professionals who can help: specialist neurologists, MS nurses, physiotherapists and occupational therapists, amongst others.

Financial & Legal help There are different benefits available that you may well be entitled to, in the UK. These can offer financial help, legal support linked to Government Policy like the 2010 Equality Act in the UK. This has enhanced the Disability Discrimination Act in the UK and helps people to recognise MS as a Registered Disability and what should be done by an employer to support Working with MS with non discriminatory advice. Additionally it protects people from discrimination because they associate with someone who has a disability, such as family members or carers and protects from indirect discrimination, like an employer making general changes that have a disproportionate effect on employees with a disability. From my personal experience, it is always good to keep copies of official letters and any correspondence and notes from my personal experience.

Working with MS? MS does not have to stop you working. Work is often helpful for many things and not just providing money to live but gaining life experience, new skills and new circles of contacts or friends. Latest research from the UK Work Foundation has shown up to 80% of people stop working within fifteen years of being diagnosed with MS. Also people with MS can lose on average eighteen years of time at work. Therefore, talk to your employer if you can and get them some useful information to help them understand more. Also know your rights linked to the law, like The Equality Act. Try to: Keep calm, be realistic, discuss the support available and make the best decision for you so you can keep working longer.

Do I have to tell people I have MS? The only people legally you MUST TELL is the DVLA if you have a Driving Licence. So inform your Vehicle Licensing Agency and your Insurance company in most cases. If your job involves activity where Health & Safety is important you may need to disclose your MS.

Can I still get insurance? In my own experience yes, sometimes it may cost a bit more but there are companies that offer great deals.

So driving is allowed with MS? Yes. The Driving & Licence Agency will advise you on the best options for safe driving. A Blue Badge- Car Parking Permit may help this and you can apply for one in most cases from your local council. Also, there are adaptations that can often be made to a vehicle to help. Various driving schemes are available to keep you mobile like Motability in the UK.

Should I adapt my home or move? This a personal decision that needs to be realistic for safety. An Occupational Therapist can give advice here and look at options for equipment that may help if you have a relapse and may not need it all the time.

Intimacy & Relationships; Will my Sex life be affected? With MS people can still enjoy wonderful intimacy together. Good communication can really help low self-esteem difficulties due to MS symptoms or nerve damage. However, with a bit of planning to help ensure comfort and work out best approaches together, couples can still have lots of fun. Sometimes, females may need to use extra lubricants to avoid dryness or use toys to help enhance orgasm. There is lots of great info available on this subject from MS charities.

Brain power- memory and Cognition/thinking As well as affecting muscles parts MS can also affect mental thinking, emotions, your ability to process information, problem solving, recalling names or words. This is called cognition. There is great advice available and ideas to help cope with these problems from MS charities. Seeing a Cognitive Behavioural Therapist or Counsellor is often very helpful to identify best ways to cope and deal with it.

Will I still be able to play sport & exercise? Yes. Keeping active is really important and may help tackle MS symptoms. A physiotherapist is a really good contact as they can give helpful advice. Lots of exercise ideas have been designed by MS charities. These can even be done sitting in a chair or focus on relaxation. There are lots of sports that help increase balance, strength and co-ordination like: Golf, Sailing, Darts, Clay Shooting, Walking or even Motor Racing. Give Sport a try as people are often more than happy to help, I find.

Is there a lot of Pain with MS? There are three main types of pain people experience apart from after an injury. Muscle & Joint Pain that can originate from the effects of spasms, posture, or walking. Nerve Pain resulting from damage to nerves where messages can be blocked or interrupted so no physical cause is present unlike in muscle pain. Talking to your Doctors is often needed to work out the best management approaches here as pain can be very debilitating.

Practical Every Day Life Needs:

Travel Tips You can still travel, fly, go on a cruise etc. It is important to make sure if taking injections to have a cool bag and a letter from an MS nurse to say you need these for your MS. Make sure that you take patient alert cards for some treatments and look after your skin if warmer than normal to avoid sun burn or dehydration.

Dental Care There are no different requirements for looking after your teeth/gums with MS. Just keep brushing properly at least twice a day and flossing regularly.

Do special diets need to be followed for MS? Having a balanced diet is important with enough fruit, vegetables, protein, carbohydrates and not too much saturated fat. There are various diets that have been promoted for MS but not fully researched. These can involve extra supplements that can cost lots of money. So really think about these and you can always discuss with your Doctor who may possibly suggest seeing a Dietitian possibly. There is lots of info about this area on MS charity web sites that is free.
As I noted at the very start of this short guide, there is a lot of more detailed guidance and advice about dealing with MS. This is on line or in booklets so you can read and research as you fancy. Try to keep up to date if you can about new MS treatment and research findings as it often helps to stay more positive about the longer term. Also check out some of the contacts listed below.

What’s the History, is MS new? MS was first recognised about 150 years ago but the cause is still a mystery.. MS effects around 2 and half million people in the world. In the UK, about 100 thousand people have been told (diagnosed) by a specialist doctor, a neurologist, they have MS.

Is MS more common in some countries around the world? Research shows that MS can be more common in the Northern hemisphere -as you travel further north from the equator. This can mean higher rates in places like Northern America, Europe but in some countries like Malaysia or Ecuador MS is very rare. We don’t know exactly why this is but it has been suggested that sunshine and in particular Vitamin D may play a role here.